Saturday, October 11, 2014

Autism is confusing to children and parents. The
first thing doctors tell you is the worst case scenario and so you work hard to
improve things for your child and adjust what life looks like for your family.
You keep working. You put your heart and soul into changing the future into a
better scenario and some days you believe it will be the best scenario. The
child knows none of this, but puts one foot in front of the other plodding
along with their head down seeing the steps----matching up the footprints to
the feet and backtracking along the path to pick some flowers too.

The more you work at it everyone weighs in with
opinions and stories, so much so it is hard to keep focused on the work or what
the goal of said work is and the child is still your child and they want to be
your child no matter what tomorrow is or is not. Someone reminds you to be in
the moment together.

So you sit with him or her and sometimes that
feels like work. Until that melts away and you are blown away by this person
staring back at you or not, but they are there wanting the same love that you
want to come back at you. It may only be a fleeting second or a slight flitter
of a love wave coming from the child, but it hits the parent with a force and
both of you know it.

As a parent, you live there forever, now clinging
to the past not wanting the wave to roll past, but to ride it all the way
in----frozen at the crest where you can see for miles, days----a clear
future----a new plan, place----a promised land. The child is there and where
are you parent?

The child is underneath the water, perhaps exploring
other fish and creatures that are much more interesting than the wave. Or they
might be looking at you wondering how you got up there on top of the wave and
how can they get there too? Or they might be wondering why haven't you, the
parent, haven’t ridden in into shore already? Or if you take in that instant,
you might see for that millisecond, you are there riding together. You want to
be there longer, but you'll cherish the millisecond and ride on in and wait on
shore for your child to come in too.

What if they don't come to shore? You worry. You
pace. You decide to gear up and go find them. So you dive into the work again
and again and again. You see the amazing fish under the water and whole other
world that your child is exploring and you are fascinated. You study it with
them. You learn so much. You are under so long that you both seem to be part of
Atlantis or growing your own gills---it feels like the world has changed to
this new exploration. You don't realize you aren't so much a part of it until
you are both interrupted by a new diver or a submarine passing you by and you
remember where you are and now the land up above this undersea world seems
farther away than ever. How do we get back? Should we go back?

If surfing above together, it is tiring for both
of you as you ride in and go right back out again and again. You are both fit
and able to do this for a very long time. But you are seldom on the same board
or wave again. It must seem more like a competition than a shared interest
anymore.

My analogies go back to the sea often. I don't
know why. I have never surfed, but admire those that do. I don't scuba dive
either, but have wanted to learn. I think it is the rolling nature of autism
and the challenges, joys, and discoveries----as steady as the tide.

Someone said today to never give up on our autistic
kiddos and their future of what they might become. As a parent, you think to
yourself, "or course not". But then I saw the sweet release of a
friend as she said she had to change the dream of what her daughter's future
looked like today. I thought this was such a wise statement of reality.

Her sweet daughter is sixteen and has come a long
way, but and that but is always there in that sentence when it comes to her
daughter, and that isn't a bad thing....autism is just going to be there and
she accepts that. Her mother is doing what is best for the moment. Her daughter
is on the “severe” end of things for lack of a better term. She is intelligent
and delightful in many ways, but silent and locked away in her own private
undersea exploration.

Her mother is being in this moment with her
daughter. They might be on the beach already or they might be going back out to
try to catch another wave. They've spent a lot of time exploring underwater
together already. I think now, they are both coming up for air.

I like to think of them
both in their own lifeboat rowing hard for an unknown destination, but there
are plenty of supplies to last quite a while. No one is worried that they both
will get where they need to be. Perhaps they both feel lucky to be floating
along in a boat with plenty of supplies. There is a map they both clutch that
might turn out to lead to hidden treasure. I'm not sure either of them can read
it yet, as it still looks like just a bunch of symbols, not making a whole
lot of sense, but I can see them bobbing up and down puzzling over this new
destination. This is what they both have discovered in the swimming, diving,
exploring, and surfing phases of the last sixteen years.

They knew they were "off the cruise"
long ago. Some said to the mother that they were shipwrecked, but not in the
mother’s estimation, the cruise part or ship was never really there. But today,
somehow these tiny vessels did appear with their names blazoned on the side of
these two little boats. They climbed in to captain their own destinations.

The mother is still there bobbing beside her
daughter, but the daughter’s boat isn’t tied to the mother. The girl is a young
woman steering her in a new direction away from the mother. They are settling
in to travel in the miles and miles of water they had just been treading in,
but it is now a partner with them in getting somewhere even if it is still
unknown. This sea of autism holds them up in their dinghies of destiny. As they
keep rowing...and rowing....and rowing into an unknown sun and they hope they can
spy land once more.

Followers

About Me

I grew up in the Ozark mountains of Missouri. I woke up in boarding school in Asheville, NC. I explored the world: Papua New Guinea, France, Morocco, Philippines, Ireland, Greece, and the Republic of Georgia. I went to college in Iowa and grad school in California. I married into the Northwest and have for a long time lived near Seattle, WA. I have one child whom I love very much.